zonegran wean--help!

[Guest guest]

I need help!!!

We just weaned the last of the Zonegran last Saturday (9 days ago). All the

drops have been pretty smooth. The drop from 50mg to 25mg was a little

rougher (some stumbly, spacey days, a few more sz than normal), but he

stabilized easily within a week. But now.... it is truly horrible. The past

few days cannot even stand up. Can't even sit well. He tips over. When

you pick him up, he's like a rag doll. Tonic-clonics every night in his

sleep. I swear he's got sz activity going all day long. His right arm is up

at a funny angle sometimes. A big increase in sz. He's not unhappy though,

just floppy. No motor control or planning. Things had been going really well

until this last drop. Within the past few days, things are worse than ever.

I'm at a loss of what to do. We even gave him the Diastat tonight to see if

it would help break things up. I would love to hold steady and see if he

stabilizes, but this is pretty disturbing. He cannot even go to school

tomorrow because he would not be safe (staggers and stumbles when he tries

to walk). We're talking to our neuro tomorrow and are thinking we'll have to

try another drug. Other than a small amount of Klonipin, is drug-free.

His ketones have stayed 80-160.

Anybody else have any problems with a Zonegran wean? Any suggestions for me?

I am desperate (and very, very discouraged)

ashley

mom to alex, age 4, autism, possible LGS, keto kid since 5/02